The Gryphon speaks to Sibongile Tshabalala, activist and chairperson of Treatment Action Campaign, about the continuing fight against HIV and the struggle to make treatment affordable.
In the early Noughties, 1700 South Africans died per day as a result of diseases caused by HIV. Antiretroviral drugs, also known as ARVs, that are used to prevent the growth of HIV and slow down the virus were only available through the private sector. High prices meant that the drugs were inaccessible for 86% of the population. A monthly dose cost 2000 rand, which was £200 in 2000, far beyond the monthly wage. Another issue facing HIV sufferers was the South African government’s denial that HIV could cause AIDS. While Sibongile respects the government’s right to research and the benefits of traditional medicine, she does not believe that sufferers should die whilst research is done. Sibongile herself, suffered from misunderstood traditional medicines. She was diagnosed in 2000, when the then Health Minister was advocating beetroot and garlic as a way to combat HIV. Her mother pushed her to eat beetroot ‘every day for every meal, even to drink water with beetroot in it’ and garlic ‘until she felt she was sweating garlic.’ Although garlic and beetroot do have natural benefits, they should only be eaten in moderation. To this day, Sibongile cannot stand the taste of beetroot.
Treatment Action Campaign was founded in 1998 by Zackie Achmat, an anti-apartheid and LGBT rights activist. Although Achmat was able to afford ARVs, he refused to take them until they were accessible to the whole population. Life without ARVs is bleak for an HIV sufferer. Sibongile suffered from TB, shingles and pneumonia whilst she was not able to access the drug. She was ‘hospitalised at least twice a year.’ During this time, she lost her husband to diseases that were the result of HIV.
The TAC’S first landmark campaign was to make AZT available for all pregnant mothers. AZT can stop the spread of HIV from mother to child during labour. Before the drug was available, thousands of babies were born HIV positive every year. Scientists and lawyers advised TAC so that they had the knowledge and expertise to take the government to court. They used the South African constitution to force the government’s hand. Aspects drawn on were that ‘Everyone has the right to life’ and ‘Children need to be protected.’ The government lost the case and AZT is now available to pregnant HIV positive women. This has helped thousands of women to give birth to HIV negative children.
The TAC has also been to court to lower the price of ARVs, another case that they won, although it was prolonged and difficult. These campaigns have meant that HIV sufferers, like Sibongile are now able to access ARVs. Sibongile has not been admitted to hospital since she went on antiretrovirals and has had two HIV negative children. She became involved with TAC in 2009, after her husband died. She wanted to know everything she could about HIV and ‘live for her son’ after her husband’s death. After ‘spending hours in the doctor’s office’ she was advised of TAC and became an activist. She is now the newly elected chairperson.
Sibongile is adamant that ‘normal and happy life is possible after an HIV diagnosis’ and her own inspirational life story is testament to that. The stigma surrounding HIV has decreased since her own diagnosis, where despite her supportive mother, many of her extended family refused to share a glass with her. Extensive media coverage and campaigns have helped to make it safe to be openly HIV positive. However, there is still much to be done in the campaign to fight HIV.
One upcoming campaign that TAC is working on is the decriminalisation of prostitution. Sex workers are some of the most vulnerable people in South African society, not least due to their constant exposure to HIV. Many women are raped or infected by customers who refuse to wear a condom. PrEP is a pre-exposure HIV drug, which reduces your chances of infection by 90% as it can prevent HIV from taking hold in the body. Sex workers are unable to access the drug, as you aren’t allowed it without providing a reason. If they declare their trade, they are liable to be arrested and the punishment can range from unaffordable fines to imprisonment. As Sibongile says ‘everyday more young girls are infected. How can we fight HIV while it is still criminalised?’ Even sex workers who have been raped are unable to access PEP (a post-exposure drug) as, treated like criminals, they can still be arrested. Sibongile expects the court case to be organised for 2018.
Although TAC continually takes the government to court as part of their activism and are not afraid to disagree with them, Siblongile would describe the two as partners. TAC is the ‘eyes and ears of the government’, they are on the ground and able to see the state of things in a way the government cannot. However, the organisation relies on donations and doesn’t accept any money from the state so that they are able to hold them to account.
The work that Sibongile and Treatment Action Campaign have undertaken has been and continues to be invaluable in the fight against HIV in South Africa. Yet there is still work to be done.
[Image: Treatment Action Campaign Facebook, Xolani – 702.co.za]